Self Injury

He looks so precious and sweet in that picture doesn’t he? Well the day that picture was taken Joel had a huge meltdown. Our mom cleaned his room while, which he hates when she does this. When he noticed that she cleaned he immediately yelled and started throwing things back on the floor like he always does. But at one point he just started crying inconsolably and hitting himself. Hard.

He was obviously looking for something but we couldn’t make out what he was looking for. I tried holding him down and hugging him so he would stop hitting himself. It worked a little bit but he would continue to cry and as soon I stepped away he’d hit himself again. After a while, I make out the word book. I ask my mom if she took any books out or moved them and said no but he left these books on the bottom shelf. ( she hadn’t touched any of his shelves and just cleaned up the floor) I showed them to him and he started laughing and said thanks. Even though he is the one that put them there and forgot, anytime he saw my mom again that day he cursed at her and hit himself again. He eventually forgave her and kissed her that night after he was able to calm down by watching Descendants on Disney channel.

He found a crown, put it on and pointed to the character on Descendants and kept saying “Me!” Thus the picture. You can’t really tell on the picture but that day he busted his lip on the inside, bruised the side of his nose and left read marks on his cheeks and forehead. He was very sad about his face and FaceTimed my boyfriend for comfort but he kept hiding his injuries and apologized. A lot of times he won’t talk me but he’ll talk to my boyfriend but as long as he’s okay, I’m okay. He iced his face and would look in the mirror very sadly. We tried explaining to him that he just need to calmly tell us and there was no need to hit himself but there’s no way of knowing is he completely understands. So far, this is probably the worst it’s ever been. And I pray it doesn’t happen again.

I know I’ve shared about our boy being violent in the past. His early teen years were a little tough, he would bite, hit, and throw things at us at home. For the most he has always been very well behaved InPublic or with other people. But for most of his mid to late teens he wasn’t very violent at all. To himself or others. Of course he still had his moments but nothing scary or serious.

In the past two years or so he has been hitting himself when frustrated. Although I’m glad he isn’t turning his frustration and hitting others, it really breaks my heart when he hurts himself. Sometimes it seems random and other times he is clearly upset about something. The worst part is that he can’t tell us what the problem is. I might be too sensitive but I literally sit there and cry at times because I know he’s upset and he can’t tell me why.

I’ve worked with families that have had this issue before and I have read about it but for the most part it’s all about therapy and medication. It took us a long time but we have finally have him with a psychiatrist but I guess we’re still in the trail and error phase… before doing this, I had tried to get him in with ABA or similar therapies but almost all have age limits and said he was too old. Others have giant waiting lists. I’m still going try to the therapy though.

His psychiatrists seems to agree that maybe a lot of his frustration is not being able to communicate. He has agreed to look for options for Joel to help him through this as well not just focus on medication. The school system did their assessment of Joel to see if he would benefit from a communication device but said the results were that he wouldn’t know how to use it. They also said if they teach him sign language that he’ll never learn to communicate. I have my issues with this and his teacher seems to be on our side and has shown me all the requests she made for Joel. It’s definitely on my list to revisit this issue again soon with the school board.

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Friendships

The story behind this picture is a good one. My sister was taking my senior pictures when I graduated college and Joel interrupted to pose. I’ll post the rest of those pictures at the bottom of this post.

Joel makes friends very easily, especially if your a guy around his age. I’m so appreciative of everyone who is kind and accepts his friendship. Thank you to those who:

  • listen to him even though you can’t understand what he is saying
  • go along with never ending games of poking and pretending it wasn’t him
  • hold his hand
  • Let him play on their phone
  • Let him take pictures for Snapchat and Instagram
  • Texting or Snapchatting/DMing him back even though he sends jibberish

You’re the best. But like always there’s always people who are just are not too nice. There was this one time when we went to a restaurant where this person, we’ll call Mr.Krabs, worked. Mr.Krabs is a family friendish, and goes to our church. He’s close to Joel’s age and like any normal person, Joel sees this person as a peer and always gets excited when he sees him because Joel sees this person as a friend. To be fair, Mr. Krabs usually will be nice and greet him in a playful way. But Mr.Krabs, couldn’t keep pretending to be nice to Joel all the time. (Mr. Krabs and I argued a lot about little things in a friendshipy kinda way but we remained amicable, but somethings I can’t easily look past. And somethings includes how you treat my brother.) 

So, we go to the restaurant and Joel immediately gets excited when he sees Mr.Krabs. This means Joel is loud and laughing a lot. Joel tries to be playful and is not taking the hints that Mr.Krabs is not in the mood. (Sometimes I can see that Joel is being annoying and I try calm him down, but if your gonna be rude, I’ll let him annoy you.)  Mr. Krabs kept giving me looks as if he wanted me to do something. At first I was trying calm Joel down but I can’t control him. The looks were okay I guess because they were pointed at me and not Joel. But as soon as his annoyed face and tone of his voice was directed at Joel, I had a problem. Strike 1.

The restaurant is small and it wasn’t very busy, maybe Mr. Krabs was having a bad day. I know I can be mean to Joel sometimes, but all Mr. Krabs had to do was be nice for 10 minutes. We weren’t in there very long at all. Joel was eating his order very happily and making gestures with his hands. Mr. Krabs grabbed his hands and placed them on the counter and said “shhhhhh.” Strike 2. Joel is thinking this is a funny game and he doesn’t see that Mr. Krabs isn’t being nice. I let it go at first, because I didn’t want to argue with him. Then came strike 3. He had had enough, looked at Joel and said, “Oh My God!” Then turned to me and said, “Can’t you control your brother.” So I yelled back kinda. “No, I can’t. You know he has down syndrome and he doesn’t get that he’s annoying you. He is just trying to play with you because he sees you as a friend.” Mr. Krabs then said, “Well, make him chill out.” So we just left. There was no point to continue arguing.

I can’t make everyone patient and kind to Joel but I wish I could. It always catches me off guard when I come across people who are not kind about disabilities. I always expect people to be patient and nice, and that is not always going to happen.

Joel’s reaction to this situation is very sweet. He never saw the rudeness and continues to always see this person as a friend and is always excited to see him. Someone asked me once who I admire the most in my life and my answer was Joel. Then they asked why and I dreaded answering because I hate getting emotional. My answer is because he always sees the good in people. He is never prejudice. He doesn’t hold grudges. He will always see you as a friend first. You can be mean to him and he may not notice and if he does, he’ll forgive you within minutes. I love him dearly, and I’m so thankful for those of you who are kind to him and keep his friendship alive.

 

Baby Talk

Side note about the picture: Joel is a huge who fan, here he is having the time of his life at comic con in NOLA.

Joel is almost 18 years old, and in many ways he acts his age. But of course, he is childlike in some ways, however this does not give anyone to talk to him like he’s a baby. It’s one of my greatest pet peeves. It’s so demeaning and it just makes me so angry.

Not too many people do it, but when I notice it I just can’t help but look at you in disgust. The sad part is, most people who do it are older family members of ours. This means I can’t really say anything to them without being disrespectful.  I mean technically I can but it won’t pretty, and they won’t let me forget it. My family/culture is different from the average American family. I remember one time I told my mom and my aunt to stop saying “pobrecito” when referring to Joel.  (Pobrecito= poor thing) Now they bring it up all the time, my mom does so way more. When they catch themselves saying it they’ll look at me (sometimes in disgust and sometimes laughing) and say Raquel doesn’t like that. They missed my reasoning and just focused on me telling them what not to do. At least it got them thinking about it?? But you get my point, I can’t really correct these people when they do baby talk.

When one of my aunts goes to tell Joel hi, a lot of the time she’ll bend down and squeeze his cheeks and do the baby talk. Joel for the most part doesn’t react and sits still, sometimes he’ll be rude and say “stupid,” luckily she doesn’t understand him. After doing this, my aunt will usually look at me with a smile as if I should be pleased with her interaction with Joel. I will not smile back lady, your interaction is demeaning. I think this is why Joel is kind of mean to my aunts when they come over. You can hear him say “Oh no, not again” when he sees them coming in. It’s so funny to my sister and I and luckily I don’t think most of my family understands him when he says it.

Joel deserves to be spoken to normally, please no baby talk.

Cliques

Joel posing so proudly after his first season with Miracle League Basketball with his best bro 🙂

This is something about that I mentioned in my other post: Comparing. When going to all these event Joel is involved with now I noticed the cliques for parents.

In our case, I’m usually the one to take joel to his events. Sometimes my mom and sister tag a long but for the most part, it’s usually just me. So, maybe the reason I don’t fit in any of these cliques is because I am not a parent. Regardless the cliques exist and bother me. I’ll use Joel’s baseball games with the Miracle League as an example. I chose this one because for some reason, the cliques are so much more predominant during these games. I really don’t know why but they are.

The cliques are divided by race and class. Sadly…

Class:

All of the parents of players who are in private school all sit together and talk to only each other. I clearly remember only one instance when one of these parents talked to me. All this person asked me was what grade is Joel in. When I answered she said, “Oh, I haven’t seen him. He goes to blank (I won’t say the name of the school) right.” I answered no and said he goes to public school. That was the last time I ever spoke to one of them beside the occasional hello.

Race:

Not to sound racist or ugly, but all the parents of the players that go to private school happen to all be white. So on one side, it is all white “richer” people. Then there’s the white parents of players that don’t go to private school on another side. So even the white families are divided. And then there’s the families of color who do not fit into any of these categories are dispersed among the bleachers by their lonesome. To be far, there a lot less colored families but for some reason, no one in these categories mix with each other. There the occasional side conversation between everyone but it always goes back to the cliques.

It shouldn’t bother me, I mean I am not there for them, I am there for my brother. This is just an observation I’ve made and hopefully it’ll change.

You Make Me Brave

IMG_3197A couple of weeks ago we went to the beach for the day. If you don’t know Joel, he LOVES the water. It’s so hard to get him out once he’s in. He’ll yell and hit and push us when we try to get him out. Usually after some struggling, we can get him out. Luckily he usually stays close to the shore, but this time he was more gutsy.

My dad joined us this time for the trip and took joel further out with him. No problem with that until we got out of the water for some snacks and my dad never got back in. Joel was thinking hey, my dad let me go far so I can do it again. By the way, my mom and I are very short and not very good swimmers… we couldnt go as far as my dad did. And I have a huge fear of deep water. If my feet can’t touch the ground I panic.

For some reason, he didn’t go that far until we were trying to leave. I was tying to hold his hand and pull him in, and he’d resist and get further away. My feet couldn’t feel the sand and I was so nervous that he’d get way too far me. I could see him struggle and get scared when the waves would get too high and I saw him inhale water. But the more I tried to pull him in, the more he put up a fight.

There was a man right next to us who refused to help by the way! Ugh!!! Anyways, my mom came to help but she’s just as week and nervous as me. But slowly somehow we got him close to shore. There Joel decided to push me and yell at me and cause a scene. My dad finally showed up and showed Joel his laser tag card and he yell “yay!” And got out… that’s all it took.

Fast forward a couple of weeks to now, I am currently in Guatemala serving in an orphanage with an awesome group. We got together one night for an amazing bonfire worship. One of the songs that we sang was You Make Me Brave. I always loved this song but that night God used it for more than just a good song. I was getting all kinds of emotional throughout the night but while I was talking to a few people afterwards, I began to see the ways God makes me brave in situations like this that I didn’t really think about. I’m scared of deep water but I remained by Joel’s side because God gives me the bravery I need to be there for him in situations where I probably couldn’t do the same for myself or others.

As a result, Joel has an ear infection because of the all the water that got in. He also may not be going to the beach anytime soon.  My poor baby…

Jokes

People are always trying to be funny and sometimes they end up being rude… or just stupid. I’m not referring to bad jokes, I am referring to jokes about special needs/ disabilities. It used to happen a lot when I was in school, which is expected because ya know, dumb teens. But it always hits me hard when it happens now, as an adult coming from other adults.

I don’t know what’s worse… Seeing someone catch themselves making that joke in front of me, them making the joke at all, or seeing them not care about making the joke. It’s all a frustrating experience for me.  I’ll share two sort of recent experiences, both from people I love dearly:

Church:

So this one happened after a Sunday service and a group of us were sitting together at a table talking.  I’ll refer to the person who made the disability joke as  Professor X. I do not remember exactly what was said but someone at the table said something and either mixed up their words or was teasing someone who did. Professor X then rolled his/her eyes, waved his/her arm back and forth by his/her chest and babbled. Then Professor X looked at me with wide eyes and said, “Oh no, I’m sorry I didn’t mean it like it that.”

What I should have said: Then how did you mean it? So, suddenly, it’s not funny because of my brother? Was it funny to you before? Why make the joke? Look, it’s okay. Just please don’t make those jokes regardless if I’m around or not. — Any of that might have been acceptable.

What I said instead: Nothing. I smiled at Professor X and walked away.

Tutti Frutti:

So this one took place at a frozen yogurt shop called Tutti Frutti. I’ll refer this person as Magneto. It was a group of us that had taken several cars. One of the people I was with parked in handicap spot. Actually they parked sideways taking two handicap spots. Now my brother can walk, my issue was not directly related to my brother, my issue was that it was a rude thing to do. So when Magneto got inside I said ask why he/she did that and that it was not cool. Magneto’s response still boils my blood. Magneto said, “But I am handicapped.” With a big ol’ smile like he’she just said the funniest thing and then did the exact same thing that Professor X did in my previous scenario. ^^

I was bolder this time, I didn’t smile. I told Magento to stop laughing, it’s not funny. Magento said, “Oh.” That’s it. Magneto didn’t apologize and that’s okay, but at least I said something.

There have been countless other times. Some that have nothing to do with Joel or his disability; like a whole group of people making fun of sign language, pretending to limp, or pretending to have any disability. It all makes me cringe and makes me what to slap them give them a lesson on decency. They should know better. Education is important people. Don’t be ignorant, don’t make these jokes.

P.S: Same goes for using the word retarded. Just don’t.

Thank God Joel has Down Syndrome

So my family hosts a home group every Friday in which some people from church come over and study the bible to together and what not. Usually at the end of each night, people tell the group if they have a prayer requested or they have something to share.

On last Friday a lady had something we wanted to share. Apparently she had asked the group if they would join her in prayer for a pregnant friend who was told by doctors that her baby might have down syndrome and they wanted to run more test. — That’s understandable. But what she wanted to share was that God is so good because it turns out that the baby doesn’t have down syndrome. Apparently the doctor made a mistake, but thank God the baby is okay. Okay? So a baby with down syndrome is not okay?

I immediately looked at my parents when she said this but they seemed to not be bothered by it. But I was so shocked that she said that. She knows she is in the home of someone with down syndrome. She spoke her words with such confidence and pride that God had answered her prayer. That was so merciful because he didn’t give that baby down syndrome. So, what does she think of my family? Does she think it’s a curse or a punishment? Should we be grieving that Joel has down syndrome? Should we not be grateful to God that Joel has down syndrome?

My parents reaction left me a little upset at them.  How did they not say something? How did they just look at her and nod? I was going to say something, and maybe I should’ve, but I didn’t. I don’t know if my parent felt what I did, I feel like they should have, but who am I say this? I did mention the situation to my mom the next day and all she said was yeah, this lady doesn’t know. That’s it. I don’t know what I expected. I’m not trying to make my parents look bad. They just have different views, grew up in a different time and in a different country. I know they love Joel and protect him, and I know I am not a parent, but I felt strongly about this and I felt they should have too.

All I will say now is I Thank God Joel has down syndrome. I know it may not be something people ask for but I am happy God gave us Joel. I know all of our lives would be completely different if he didn’t have down syndrome. I am grateful that he was created this way. No pity, no prayer requests on changing this, no.

My Comforter

Here’s an old picture of Joel, ain’t he cute! A little background on this picture:

Joel was definitely not my comforter when this picture was taken. I was in high school at the time and my sister and friend decided to go to Celebration in the Oaks which is a Christmas event in New Orleans’ City Park. Joel loves going, especially the musical part. When we reached the musical part, Joel loved it so much that he refused to leave. He got so mad that I was telling him it was time to move on. We had already spent too long there but he was having so much fun dancing. It was getting late and Joel wouldn’t stop dancing so I went up to him, grabbed his hand and said let’s go. At that moment my life flashed before my eyes. (kidding, I’m exaggerating but still!) He had hit me, pushed me down and scratched my neck really hard. He immediately felt horrible and began to cry saying sorry over and over again. At least he agreed to leave after that.

Joel has always been my comforter. Despite what I have said in previous posts and above ^^, at home Joel is usually pretty loving and affectionate most of the time. He’s always going in for hugs and kisses and as he’s grown older his hugs have gotten more intense and sweeps us off our feet.

Some of the sweet ways he comforted me was through the years:3D968E3A-BA93-4CAA-8A0B-2C8E83E81FE7

  1.  Random foot massages. This instance I was doing homework.
  2.  Joel always stands up for me when I argue with our parents. I know I probably shouldn’t encourage this but he’s too cute and I love that he chooses my side! He tells my parents to shut up when they raise their voice at me and holds my hand when this happens.
  3.  He gets very concerned when I cry. When he notices that I am crying, he slowly walks close to me and stares at me a bit, then asks “Why?” or “What happened?” Then he’ll wipe my tears and try to make me laugh or distract me by bringing out UNO.

Joel is my comforter and I love him for that and many other reasons!

 

Respect

The way we speak says a lot, whether we realize it or not. Especially when we speak to people with disabilities. It is important that we are aware of our terminology and manner of speaking. There is power in our language and in what we put labels on.

The first thing we need to understand is that people with disabilities are not suffering from a tragedy, struggling to become normal, victims, nor are they retarded. To most people, their diagnosis is not their most important characteristic. (to others, it is the most important) We normally do not go around introducing ourselves as, “Hello, I’m diabetic Jane.” So why would we do the same to a person with any kind of disability. They are people first, not their diagnosis. Right? Or maybe this is not always the case…

From watching Born This Way and reading other blogs and articles, I realized something. What I wrote in the ^ above paragraph, it does not apply to everyone. Many people wear their disability or condition with pride. Something John from Born This Way says a lot is “I am down syndrome.” Now, I do not know if he knows the power in that statement, but I do and I know many others do as well. To me, it means that he recognizes that down syndrome is part of who he is, it is not just a diagnosis.

So, where do I stand with the whole people first language thing? I think that whole movement (campaign?) is great. Personally, I use people first language professionally and most of the time generally. But I also think that some people with disabilities don’t care and others purposely want to identify with their disability first. It is a personal decision and who are we to correct someone who chooses one over the other. There have been many times I would see a post from a parent and they would not use people first language and a lot of the comments are correcting this parent. It think it’s crazy to correct someone based on whether or not they use people first language. Like I said, it is a personal decision.  Now some people use it in a hurtful or demeaning way, that is not who I am defending!

There have been many times that I have heard someone say, “poor thing”, “how sad”, or even “it makes me feel so sorry” referring to Joel. I get that since he has down syndrome, you can see he has a disability just by looking at him. So just by his disability being visible, we get a lot of looks and phrases like the ones I just mentioned. I know they may say this with good intentions or maybe even out ignorance; they are not trying to be rude but things like that are not acceptable to say. My brother lives a very happy and productive life, and nothing about that is sad. He may be different and require more patience but its not sad.

When speaking to people with disabilities, it is important to remember that they deserve to be treated as an equal. Speak to them first, as opposed to speaking to whoever they are with, it is important to acknowledge them. Give them eye contact and make sure that you give them time to listen, process, and respond. If they are having trouble understanding, please be patient with them.

I know that for me it can be frustrating to constantly repeat myself, but I try not to let that show. Joel is not oblivious to the difference in my tone when I speak, so I need to be mindful of the tones I use and the reactions I give after they respond. In my Joel’s case, unfortunately, I can lose my patience. The more I have to repeat myself, the louder I can get. He notices when this happens and constantly apologizes. Once he starts apologizing I feel terrible and explain to him that he did nothing wrong and he should not apologize.

Another important thing I need remember is to use appropriate language that Joel or other people with disabilities I come across will understand; don’t use jargon, difficult words, or figure of speeches. This is not true for everyone but for most people with cognitive disabilities I think it is. It is also important to understand that sometimes it takes time for them to trust others, so do not take hesitance or silence personal. Everyone is different and not everyone will react the same way and they are not all on the same level. Some know and understand more, so not everything I mentioned on this post applies. The difficulties of one is not the same for all. The important thing to take away from this is RESPECT.

FHF’s Version

Joel’s First “Job”

While I was in college I worked at our neighborhood Baskin Robbins. Joel would come in all the time (once he disappeared from home because of Baskin Robbins, but that’s a different story for another day.) He loved that place and still does but we have to limit his visits now for health reasons. Many times when my family would come in while I was working Joel would refuse to leave. There were several occasions that our parents left him there while I was working because they could not get him out of the store. Luckily, the owner was very cool about it every time and also said Joel could stay as long as he wants. We did not think much of it other than thinking he was being rebellious towards our parents.

Joel can be very hard-headed at times,  just like any other teenage boy. He listens when he wants too and has a hard time being obedient.  BUT! This is only the case with us, when he’s at school, camp, or with other people who are not in his immediate family, he is such an angel. To be fair, his behavior has gotten better, but at the time this story is taking place he was still being difficult, but mostly just to our parents.

So, it was one of those days that Joel was refusing to go home and hiding behind the counter so our mom would give up trying to take him out. But this time was a little different instead of chilling in the back and playing games on his IPod, he stayed by the counter and said the word, work. (a little side note here: at this time I had also started working at our state’s PTI and I was beginning to learn a lot about disability and employment and all that good stuff) So, this put ideas in my head and I wondered if maybe Joel was ready to work. I called the owner and asked if it was okay to let Joel work with me, thankfully he was super supportive and said he could also take a share of the tips too.

So I gave him my Baskin-Robbins hat and he became the happiest kid ever. He did everything I told him to like a good employee. He helped me make cones, wash dishes, restock the supplies, and hand customers their order.

Most people were very nice and started conversations with us about disability and how cool it was to see him there. But there’s always a bad apple. One lady, although she never said anything, was bothered by him. She kept giving him a look and she didn’t want to take her cone from his hands. This caused Joel to drop the cone and he got upset and went to sit in the back. Still the lady never said anything, I fixed her order and she left. I was the kind of employee that never took crap like that from customers, but this time I kept my cool and went to tell Joel it was okay and we would try again later. He was trying to explain himself to me but he’s speech is very hard to understand, but he was able to pull himself together and went back to work. Later that night he called my dad to come get him when he was tired. He went home feeling accomplished and with some tip money.

He continued to pop in to work with me whenever he wanted until I stopped working there. I am very grateful that we know such an open minded person such as Ramzy, the owner of our Baskin Robbins,  that allowed Joel, who can’t speak and only works when he feels like it, to come in whenever he wants for as long as he wants. What kind of employer does that? It’s truly amazing and encouraging to know there are people like this out there. You’ll never know what opportunities are out there until to open up and ask.

Here’s the same story but written for my job: FHF’s Version